The MS Trust has an email alert which highlights research in MS published in the preceding fortnight. How do we choose what to include? And are we getting it right? This is how it works at the moment.
A huge amount of research on MS is published every week. Even if we only include what gets published in scientific and medical journals and then listed in Pubmed, a specialised search engine for medical journals, there are typically between 200 and 400 new publications every fortnight. Different people will be interested in different areas of research so the question is how to choose what to include to suit most people most of the time. Also, how to produce a list that isn’t so long that people can’t face looking through it all.
This is what we do:
One of the Information Officers at the Trust will look at what’s been published every fortnight using the list on Pubmed. This means having a quick read of up to 400 abstracts like this one covering The association between multiple sclerosis-related fatigue and balance as a function of central sensory integration.
A selection is chosen using some flexible guidelines. The more a piece of research fits with what we’re looking for, the more likely it is to make the final list. We particularly like to include research which:
- Is high quality
- Is innovative
- Will make a difference to people with MS now (or very soon)
- Presented in an understandable way
- Has huge potential to make a difference, even if it may take a lot more work (or time)
We also face a few dilemmas:
- We have a really varied audience which includes people with MS, friends and family and health professionals. Should we only include research items that interest most of them or should we have a few that use more technical language or require specialist expertise?
- Should we always choose items that will help lots of people or should we have some that will have a high level of impact but only for a small number of people?
- Should we keep away from subjects that may be difficult to read about for someone newly diagnosed but really important to someone who is severely affected?
- Should we keep to “good news” stories? Not all research is good news – for example, some clinical trials do not show any benefit. Do people want to know about these?
- Are there topics that are off limits? For example, is it depressing to learn about how common depression is in MS? Or is it important to acknowledge this and then provide suggestions on tackling depression?
You can take a look at the latest Research Update here. For each update, we pick one paper to highlight. The research is summarised, along with some background information on the topic. At the end, further information is offered and may include things that someone could do immediately to help.
Overall, we try to offer a range of topics over the year, to keep people up to date with the latest research and to provide additional information that will help people right now.
Are we getting it right? Email firstname.lastname@example.org to let us know what you think.
If you would like to receive our Research Update email alert, you can sign up here. You can unsubscribe at any time.
Pain, fatigue, depression and anxiety common in first year after multiple sclerosis diagnosis
21/07/2022 - 00:00
Pain, fatigue, depression and anxiety are common in established MS; this study monitored the symptoms during the first year after diagnosis of MS.
Updated NICE multiple sclerosis guideline contains some good news and some bad news
22/06/2022 - 00:00
There are some positive points in the revised 2022 guideline but the MS Trust is disappointed that NICE has been unable to recommend Fampyra.
The ADAMS project
25/05/2022 - 00:00
Dr Benjamin Jacobs spoke to us about a new study on the genetics of MS in people from minority ethnic backgrounds which may eventually shed light on why MS can be more severe for Black and Asian people.
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